Health Care Access and Coverage for the Lesbian, Gay, Bisexual, and Transgender (LGBT) Community in the United States: Opportunities and Challenges in a New Era

By many measures, societal acceptance and support of LGBT rights in the United States have increased significantly in the last decade, especially in the last couple of years. Perhaps most notably has been the increase in public support for legalization of same-sex marriage, as well as gains in legal recognition, including the June 2013 Supreme Court decision which overturned a major portion of the Defense of Marriage Act (DOMA), resulting in federal recognition of same-sex marriage in the U.S.

At the same time, however, a majority of states continue to impose bans on same-sex marriage and most offer no protections based on sexual orientation and gender identity in the areas of employment and housing, and many LGBT individuals report having experienced some form of discrimination based on their sexual orientation or gender identity. Ongoing discrimination, violence, and stigma compromise access to needed health services by LGBT individuals.

In a new issue brief from the Kaiser Family Foundation, we examine what is known about LGBT health status, coverage, and access in the U.S., and look at recent changes within the legal and policy landscape which serve to increase access, in particular, the pivotal impact of the Affordable Care Act (ACA) and Supreme Court’s DOMA decision. Both have the potential to dramatically reduce the rate of uninsured and make the health system more equitable in LGBT communities, although many outstanding questions remain.

Our summary of the data shows the importance of improving coverage and access to care for this community. Sexual and gender minorities experience worse physical and mental health outcomes and face unique health challenges compared to their heterosexual counterparts. These include a higher prevalence of HIV, mental illness, substance use, smoking, and other health conditions. The impact of the HIV epidemic is particularly alarming, with gay and bisexual men accounting for two-thirds of new HIV infections, and studies reporting that more than one in four (28%) transgender women are HIV positive. Because of this impact, the Foundation recently launched Speak Out, a new campaign aimed at raising awareness of HIV in the LGBT community.

LGBT individuals also face a number of challenges when trying to access health services, including barriers in obtaining insurance coverage, gaps in coverage, cost-related hurdles, and poor treatment by health care providers. For example, a recent survey found that one in three LGBT individuals with incomes under 400% FPL are uninsured, a group that could qualify for assistance under the ACA. Challenges are often greater for transgender individuals who are even more likely to be poor and uninsured than LGB individuals and have often been left out of the system either due to denial of coverage or provider inexperience with their health needs.

The ACA and the Supreme Court’s DOMA ruling will help mitigate some of these challenges. The ACA extends coverage to millions who are uninsured through the expansion of Medicaid (in states that choose to expand), as well as the creation of new federally subsidized health insurance marketplaces in each state, and it includes non-discrimination protections on the basis of health status, sexual orientation, and gender identity. The DOMA ruling has resulted in federal recognition of all legally married same sex couples, including health coverage for same sex spouses of federal employees and the workplace protections of the federal Family Medical Leave Act (FMLA).

While these changes are expected to increase health insurance coverage and access for LGBT individuals and their families, many challenges and questions remain, including:

What will be the impact of state policy choices on access and coverage?

A key outstanding issue in assessing the impact of these policy changes is the wide variation in state policy choices, particularly regarding Medicaid expansion and recognition of same sex marriage. Because about half the states do not plan to expand Medicaid at this time, the estimated number of LGBT uninsured adults who will qualify for new coverage is much less than originally expected and many will find themselves in a “coverage gap” – not eligible for Medicaid but too poor to qualify for subsidized coverage in state insurance Marketplaces. Additionally, while the DOMA ruling resulted in federal recognition of same-sex marriages, most states still do not recognize same-sex marriage, which limits the availability of dependent coverage for same-sex spouses in the private insurance market. Despite the potential of the ACA and the Supreme Court ruling to broaden coverage, the impact will be uneven across the country, and raises concern that many LGBT people will remain uninsured.

How will new protections against discrimination be translated into practice and where do gaps remain?

The ACA’s nondiscrimination protections and insurance reforms broaden LGBT individuals’ access to the insurance market as well as the practice setting. Plans can no longer refuse coverage based on pre-existing conditions, such as HIV, substance abuse or a transgender medical history. The ACA and other federal regulations also provide new non-discrimination protections based on sex, defined to include gender identity and sex stereotypes, in any health program receiving federal funds (such as Medicaid and Medicare), and extend this to include sexual orientation in state marketplaces. In addition, virtually all hospitals and long-term care facilities must guarantee visitation rights to same-sex partners. As important as these protections are, however, they are uneven and do not affect other policies in place, such as the fact that in most states employers can still fire, and thus effectively end health coverage to, an employee because she is LGBT. In addition, as currently interpreted, federal regulations do not prohibit discrimination based on sexual orientation outside of state marketplaces, where many lesbian and gay individuals will continue to get their care and coverage. Beyond these issues, questions remain regarding how providers, payers, and policymakers will utilize these protections to promote access to care.

Will LGBT people be able to find care that is responsive to their health needs?

While systems level policy and regulatory changes are important, the provider-patient relationship is at the heart of health care. High quality health care must provide a safe and welcoming environment for all patients. However, studies have shown that LGBT individuals often face discrimination and stigma by their health care providers, including refusal to provide care, discrimination that compromises care, and discomfort and lack of knowledge about caring for LGBT patients. Fear and the actual experience of stigma and discrimination can discourage people from seeking needed care and result in missed opportunities for prevention and treatment. With more LGBT people becoming insured and entering the system, it will be critical for clinicians to be properly trained to meet the health needs of a changing patient population. Filling the current gaps in education and training can be a starting point for this, and some professional organizations have already issued policies that include non-discrimination protections based on sexual orientation and gender identity.

How will access to and quality of care for LGBT communities be monitored?

The historical lack of data and research on sexual orientation and gender identity has impeded the understanding of the health and care needs of LGBT communities. To date, most federally-sponsored surveys have not collected and reported national data on the health of sexual minorities. The ACA calls for the inclusion of routine data collection and surveillance on disparities, which includes LGBT populations. While this effort has begun with initial testing of questions in some federal public health surveys, it will be up to researchers, providers, and advocates to ensure that data collection efforts are realized and that results are analyzed and disseminated broadly throughout public health research.

***

While recent policy changes stand to increase access to care and coverage for LGBT individuals in the U.S., an insurance card alone does not guarantee access to quality care. The ultimate impact of these changes on people’s lives will depend on a range of factors, including further interpretations of federal regulations and state policy decisions, shifts in how care is delivered and structured, and the ability to reduce stigma and discrimination against LGBT individuals at the system and provider levels. There is progress, but the struggle for equal rights and access to care is far from over.